I decided to start blogging about Jordan from the moment I found out I was pregnant. Jordan was born with a little arm that didn't grow like most babies. Her left arm stopped just above the elbow. Now I'm committed to making sure Jordan gets everything out of life. We feel blessed to be the parents of a very special little girl.

6.29.2007

It's Jordan's half birthday!! It's just amazing to think about what a big girl she is turning into. We had Jordan's 6 month IFSP meeting this morning: Individualized Family Service Plan as part of the state's First Steps program. We are going to cut down on our PT time (we were approved for 2-3 appointments a week) and we're going to continue the two OT appointments a week.

Another big deal event happened today. Jordan started making the transition to her new classroom. It's full of 18 to 24 month olds. All of the kids walk and play at a level that Jordan needs to reach. She knows a few of the kids really well so I think she'll be excited about that. I will miss the wonderful teachers she's had in the 12-18 month old room. They have been so incredible with my girl. But I'm glad she's making the move just so she can be around older kids who can challenge her physically.

Jordan isn't screaming as much as she did last month. She's finding words and using a few more signs. She is still very clingy in a loving, but challenging way. For some reason, when I gear up to cook, Jordan turns up around a leg demanding I pick her up. I actually cooked an entire meal with her in the hiking backpack just so she'd stop begging! She is still a Mama's girl... But she's also getting much more excited about her Daddy. In the past week, she's been much more interested in him. As we drive home, she starts giggling and yelling "Dada!" She squeals when she sees him. She kisses him on demand more often. She also smooches her brother more often. As we drop him off at school, Jordan always walks over to him and gives him a kiss. She seems to be pretty proud of that. I think Cam is proud of it too.

Jordan is talking so much. She's very interested in making dog noises. Her favorites are monkey and dog noises. But she can make all kinds of other animal noises on demand. She can also copy a bunch more. You should hear her say 'moo.' I should try to get some audio of it. Classic stuff. Colors aren't that exciting to her yet... But she is starting to get excited over Dr. Seuss's book on colors.

My girl is becoming more self-reliant... But she's still trying to ask me to carry her around. I'm doing my best to help her but also encourage her to give it a try on her own. She's trying very hard to play just like her brother. Any toy he has is better than the one she has... Standard younger sibling stuff. She knows what she wants: His stuff. We're hearing the world "MINE" more. It will make our future road trip very loud.

We spent most of the past month dealing with intestinal issues... They aren't resolved yet. I'm hoping her final 6 teeth might come in and clear things up... But Jordan's made it clear that teeth making is a slow and mysterious process for her. We're going to have to get her prosthetic fixed for her growing arm... And we're going to need to get lifts back into her shoes to help straighten out her legs and flatten out her feet. But with all of the challenges, she's growing and thriving!

6.27.2007

So I had kind of hoped Jordan had a parasite so we had an answer to her health issues. No luck. Her kind doctor emailed the results to me tonight as I asked for more ideas on how to stop these ickies. Her diaper messes got worse today. It's just exhausting and stinky. I can only hope that this is because of her teeth and it will end when those final six pop through. She is 18 months. They should be here any day now! Shouldn't they?

Along with that, I think she's growing out of her prosthetic. She got it 8 months ago and it doesn't seem to fit right. Her arm looks a little folded when you take it out of it. I'm going to try and get a picture of that "fold" so the prosthetic company can see the challenge. They may be able to grind out some more space for the prosthetic so Jordan can feel more comfortable.

Along with that, I talked to Jordan's physical therapist today... And the sweet sandals that Jordan loves... aren't helping Jordan's legs. Apparently they're bowing out because Jordan still isn't walking with her feet flat. So she needs lifts... And it's hard to get a lift to work with sandals. Poor baby. So I have to get leather shoes that fit... and if we can get the state program to pay for it, we could get a plastic mold for Jordan's feet in the sandals. For now, I'm going to have to find size 5 leather shoes. I just bought her canvas, but I was told leather is the best way to truly hold her feet in place. Dang it. Nothing is easy. I know we should count our blessings. She's incredible and we're lucky to just deal with these kind of challenges. But dang it. Why can't my little girl who LOVES shoes just wear the shoes she loves? I know it's a bigger deal to me than to her. But the little things like that... It just sucks.

But she's walking. She's walking A LOT. And she has no fear. And I am so damned proud of her.

But I really, really, really, really, really want an iPhone to play with... And there's no way on earth that I can afford it. I already spent money on a Treo. I love my Treo. But I love this phone. Here's more proof:

I will not discuss the iPhone again until I miraculously own one someday.

6.26.2007

I'm a Firefox user and this is a really cool add-on. It helps create a profile and gives the parent the opportunity to design what their kids can or cannot do online. It's super user friendly and I'm very excited. Plus, I got in on the fun early enough that I was able to get usernames that were close to the kids' names. It even has a pre-reader setting. I love it. I love it and I haven't even been able to completely set it up.

6.24.2007

Fun and exiting weekend for Miss Jordan. She got to play in water, with bubbles and we restocked the sandbox... So she went CRAZY with that.

Unfortunately, she also learned that throwing sand with her brother leads to a very unhappy bathtub experience. It may take days to be sure I actually get all of the sand out.

She had a ball though. Her grandparents were in town so she had more people to kiss and flirt with. And the words! Oh my gosh the words. I discovered this weekend that she knows the word 'bubbles' and 'MINE' and she can sing "row row row..." when you sing Row Row Row Your Boat. She rocks back and forth and sings "row row row!" It's adorable. She's never joined in on singing a song with me before. I love it. I swear she's trying to repeat sentences like "I love you" and "I'm going to get you." It's fun. The hard part: She's starting to get into little battles with her brother. As her grandparents and I said today: It's ON. The challenge of brother versus sister is ON. Heck, Jordan was telling Bubba the dog that the toy he was sniffing was "MINE!"

Yesterday I had this awesome moment. I was smiling and enjoying the day to my inner core. Suddenly I had to think about what day it was... I had this amazing and peaceful realization that it was Saturday. We had one more day to play. I was so excited that I grabbed Randy to set up our big tent in the backyard. We slept out in the backyard with Cam while Jordan and her grandparents slept inside. We'll experiment with Jordan camping when we actually get to the campgrounds. It'll be great -- Maybe not a lot of sleep, but it will be great!

6.22.2007

Thank goodness it's the weekend! It's been a long one for some reason.

Miss Jordan's grandparents are here to spend some time with us. Thank goodness they were here -- I needed to get Jordan into the doctor since her gross and unexplainable diaper issues continue to wreak havoc on her bottom and clothing. I was able to get time with our doctor... But it was only 50 minutes before I needed to be at a graduate student's project dissertation. My in-laws were kind enough to wait and wait and wait to see the doctor (since I had to leave before she came into our exam room). But lucky me (and I'll try not to get graphic)... I get to scoop poop into various container so they can be sure she doesn't have a parasite. Nice, huh? Everything about Jordan is totally okay... Actually great. She's 23 pounds, 3 ounces!! I just wish we could figure out why her intestines aren't doing their job properly (and we're heading into our third week of this issue).

We did enjoy some time at another t-ball game. She also enjoyed a dinner out at one of our favorite restaurants. It doesn't have a kiddie menu, so I ordered catfish and garlic mashed potatoes. I figured I'd just share. Official discovery: She LOVES garlic mashed potatoes. She grabbed a spoon and just dug in. It was awesome.

We really enjoyed another t-ball game once Cameron calmed down (he didn't get a nap and was VERY cranky). Jordan was walking all over the place, laughing, drinking water and playing with anything and everything. I really like how the entire crowd is used to Jordan and even laughed about how she was suctioning a water bottle cap onto her little arm. You can see her playing with it in that picture. She really will play with anything with the little arm... That's when I had to take the potatoes away at dinner: She took a spoonful and started smearing it into her arm. Messy. But it must have created an amazing feeling. I can't wait to have the chance to ask her what things feel like on the base of her arm compared to her hand. That will be fascinating.

6.19.2007

I was sitting at the dinner table with the kids on Sunday. We were listening to music off of my computer when this ROCKING song from the Bottle Rockets came on. Cam started dancing in his seat and not eating. So I told him that if he ate a couple of bites, I would stop everything and dance with him.

So we danced and Jordan joined in on the fun. It was so awesome I grabbed the camera that was closest to me: the cellphone. So here was a sweet dancing moment:

Another great moment happened at dinner tonight. We grill up corn every once and a while. The last few times I just cut the corn off for Jordan to eat. My mom convinced me to just give Jordan a hunk of corn. So I did.

When you walk by Jordan when she wears her myo, she looks a little muscular on one side -- the prosthetic is a little wider than a standard little girl's arm. Then you have to look a little closer to notice the arm is permanently bent at an almost 90-degree angle. Then you notice the hand -- it's very doll like. And since it's the summer, it's also strangely white compared to her other tan arm (I swear I use sunscreen, she just tans easily).

Now that Jordan walks most of the time, I have time to enjoy walking a bit more. I look around more to make sure there aren't any dangers for Jordan to walk into. And since Cam is attending new school for the summer, there are a lot of new faces to see and meet. So kids do double takes, adults stare just a little... Standard stuff. I just wish more people would feel comfortable to ask what's going on. It took almost half of the t-ball season for parents to feel comfortable enough to ask what happened. The funniest reaction: "I'm so glad it wasn't something like cancer!"

I guess every new stage for Jordan is a new stage for me as well. I interact with the public a little differently. I'm very comfortable talking about Jordan. I also thank children who ask what happened to her. I thank grown ups who are brave enough to ask as well. I just hate grown ups who stare. I really hate grown ups who try to get away because they don't have the nerve to ask.

I heard about a new term on a blog recently: Disablism. It's like racism, ageism, sexism. There's a growing discussion about how disabled isn't the end of the world and more people need to lighten up. My brother-in-law left this article out for me to read the last time we came to visit. Look at the lead picture. It's fantastic. Jordan's arm doesn't define who she is and I just wish the uncomfort that follows people who see her with or without her prosthetic would fade away. If I could, I'd put Jordan in her "Dude. Where's my arm?" shirt every day. It defines our attitude. Get over it folks! Look at her! She's incredible. She's beautiful. She's JUST RIGHT!!!

6.17.2007

I know. She's been walking for 3 weeks and I haven't captured the right moment on video. So while the kids and I were sweating it out at the local gardens near our house, I shot a little video of Jordan walking. It was WAY too hot to put her into her myoelectric arm for the first time in almost a week. It seems a bit mean to remind her of the weight and then expect her to sweat it up at the same time. Anyway. Here's the video:

I was a little focused on trying to get a sweet flower picture with the kids together... But it was WAY too hot even though it was 9 in the morning! Not to mention, Jordan will NOT let me pose her in any way shape or form. Cam is NOT interested in following the girl around for the possibility that I can capture a great sibling shot. AHHHHHH!

Jordan got to hang out with Daddy while I planted new plants in the front yard this afternoon (I'm a glutton for punishment in this heat). After I wrapped up my work and took a shower, Jordan cuddled with me like I had been gone for a month. It was incredibly sweet. There's no doubt, my girl loves me as much as I love her.

6.15.2007

Jordan's prosthetic is back and she'll be able to start wearing it again tomorrow. She will be the proud owner of a prosthetic with a new glove! The "skin" is clean again!

Miss Jordan is walking better than ever. It's pretty exciting. But her tummy isn't improving. The BRAT diet only led to a really gross diaper problem... A different problem than comes from eating standard food. So I'm a bit stumped on what to do. I kind of think we're just going to have to play this out by ear until those teeth actually push through. It has to happen soon!

6.13.2007

Jordan's battery on her prosthetic just flat out failed. So it should be back home by tomorrow for her using enjoyment again. She has been pretty uninterested in using the passive prosthetic. It isn't heavy and she can move it around more... But she's been pretty off balance using it.

I guess I didn't realize how she actually has come to rely on her prosthetic. It gives her a center of balance. It also gives her some substance to hold onto things. At the same time, she's really good at holding on to items with her little arm... And her chin. The chin has become a really important holding point on her body -- it helps her turn things around or temporarily hold something on its way to her little arm. It's amazing to watch. I really need to capture a bit more video of her walking and holding skills!

At the same time, Jordan is gooky. Her nose is running, she's coughing a lot. No fever and I still am pretty sure it's because she's making the many teeth she still needs to grow. Either way, all that mucus is causing a lot of really icky diaper problems. I've got her on the BRAT diet again, but I haven't seen much improvement. I might return to bland, but non-BRAT food. I can't quite decide.

6.10.2007

We just got back from visiting with Uncle Barry. Jordan had a ton of fun smiling and playing and watching all of the dogs barking in the neighborhood.

A couple of funny stories during the trip:About ten minutes into the visit, I went outside to get the diapers and bags out of the car. I heard Jordan crying in the house and figured she was just mad I wasn't there. When I get in, everyone appeared to be in crisis mode. It turns out Jordan was crying because she got into a pan of paint. She had paint on her legs and on her arms... But it hasn't made it to the face or hair before she was rescued. No harm done other than forgetting to bring the painted clothing home.

Jordan spent time on a school playground with Cam and Uncle Barry while I took pictures. She wanted to climb and climb and climb. There was also a ramp that was on an incline that challenged her. She would go up and down and up and down and up and down. By the time we left, she could walk up the incline without using the railing. She could get about halfway down before reaching for the railing. She is braver than ever before.

Jordan has one pair of shoes that keep her ankles steady when she walks. I've really wanted to get her sandals as well. So I took her to my favorite kiddie shoe store. We found a sweet pair of sandals that have a bit of ankle support. The employee handed me the sample shoe and Jordan immediately reached out to see it. She grabbed it and started trying to put it on. She loved that shoe. She hated having her feet measured. But once we put that sandal on, she was sooooo happy. It turns out she wears a size 5, but her trainer shoe that's a 4 still fits for a little while longer. So after we bought her new sandals, she kept lifting her feet up to check out her shiny new shoes. She LOVES them. She'd giggle and stare at her feet. I swear I didn't teach her to like shoes. It's just a natural love. It's amazing. It was so sweet. When we got back to Uncle Barry's house, she would lift her foot up to show off the shoe. Hilarious stuff.

6.08.2007

I'm trying to get my brain around the concept that Jordan will be my only child in daycare. She's going to move up to the "other side" of the building in a month or two. That alone is more proof that my "baby" is growing up. Logically, I know she's a toddler. I know she has strong opinions, many words and fits pretty well in 18 month old clothing. Those are all signs about how big she is.

I actually stood in line to get into a clothing resale shop tonight to buy a few 2T outfits for the fall and winter. I figured filling a $5 bag full of resale clothes couldn't hurt. I passed up an outfit because it looked too tall. Complete denial of my child's continuing growth.

Is that a bad thing?

Other signs of growth. Jordan is trying really hard to climb stuff. Without her arm on, she tries to get up the ladder that gets you to the top of our treehouse/swingset in the backyard. She likes going down our tall and fast slide (with me guiding her down a bit slower).

Something bad happened to Jordan's prosthetic arm. It doesn't work at all and the on/off switch is kind of pushed into the arm. I'm pretty bummed since I was able to get new straps to help hold it up better onto her arm. I was hoping that would help trigger the hand to open and close more. Alas. Not yet.

6.03.2007

We spent the day at an event called Art in the Park. We got to see cool art, eat yummy food and watch the kids play. The best part for Jordan was a huge sand area to play. She was almost swimming in it. She was a mess and I didn't care.

We had a few interesting moments while we were playing. While Cam was getting his face painted, Jordan and I chased each other around her stroller. A woman who was working with the face paint booth told me she remembered seeing Jordan at a theater event this spring and said she thought Jordan is as beautiful as ever. With any other kid I'd think they were joking about remembering a child from an event from months ago... But Miss Jordan is memorable. And honestly, it was a sweet comment about my girl.

But I had another situation with a little child that I'm a bit stumped on how to handle.. Especially since it keeps happening. A little girl who was probably around three years old walked up to Jordan from behind and started touching Jordan's arm. Jordan was tired from all of the excitement and didn't like being touched. The only thing I could say to the little girl was -- "It feels just like your arm. There's nothing different, it's just smaller." The little girl asked where Jordan's elbow was -- which I thought was kind of cute. She was more worried about the elbow than the hand. That was new. I gave her the standard "that's how she was born." Her mom said "and that makes her really special." How do I keep kids from touching Jordan's arm? How do I help Jordan react well when she is touched when she gets older enough to let kids know that she will be their friend but she doesn't want to be touched? I want Jordan to be approachable. But I don't want to her to feel violated.

6.02.2007

For the first time in my 17-month-old's life, I let her watch almost an entire hour of Sesame Street. She sat on my lap while the whole family gathered in our bed. She kept pointing and saying "baby!" The theme was about babies and what it's like being an older sibling. Cam was even engaged.

But here's the thing. I haven't really plopped the girl in front of the television before at home. She's watched DVDs in the car during a long car ride, but never at home. By this age, Cam was a pro. But Cam turned into one of those kids who zones out with the television on. When he was little, he'd throw such a tantrum when I turned off the tv that I just stopped turning it on. Nowadays Cam has to earn 30 minutes each day. That's pretty much it. So Jordan loses out. She watched about 50 minutes this morning and she was so engaged. She learned about the letter E and the number 17. She watched all kinds of people talk about babies. She loved pointing out the babies.

Should I Tivo Sesame Street so she can learn more some other day? Is she falling behind because she hasn't worked on colors and numbers like Cam did... Especially since we've spent so much time getting her gross motor skills up to speed? I know this is silly, but my boy knew his colors at 18 months. That's before they really teach that kind of stuff at school. It's silly for me to expect Jordan to understand colors at the same age. It isn't normal. But for some reason, I open that little baby color book every morning for her to read just in case her mind can grasp onto the concept of colors as early as her brother.

Did I mention Jordan demands to read books in her crib every morning before I can get her out and change her diaper and clothes? She loves to page through her bwa-bwas. (Yeah. She calls a book "bwa-bwa")

Did I mention that the closer Jordan comes to being a full-time walker, the more personality comes out? She's dynamic. She loves to interact with people, but she's wary of strangers at first. She'll actually hide into my legs. If she's comfortably walking, she'll drop down into scooting mode if she feels crowded by a stranger. She also loves to say hi. She is starting to talk to people on the phone! But as she grows more independent, she still loves me with all of her heart and soul. It's incredible to watch the joy in her face when I walk in. It's so great to get the hugs and cuddles when I pick her up! She is such a sweetheart.

Did I mention she'll kiss Mommy, Daddy and Cam on demand. She'll even kiss the phone when asked while we talk to family members.

Did I mention that Jordan is SO into using the word "no." It's comical. I'll tell her it's time to go upstairs. She says no. I ask her if she wants a snack. She says no. Any sentence that ends in a questioning tone leads to Jordan saying no. Most of the time, she really means it. She wants to do her own thing unless she wants me to get involved. It's FASCINATING to watch her become her own person. Cam made this transition so rapidly, I'm gobbling up the process of watching Jordan grow.

6.01.2007

During Cam's pre-kindergarten graduation, I basically let Jordan run free. I trust the families who have kids at the school, we were sitting near the back and her favorite teachers were there keeping an eye on her. She wasn't disruptive, she was just enjoying this whole entire walking life.

It was AWESOME to watch. You know, it was also just special to see other Moms who were as thrilled as I was to watch her moving and grooving with such ease. They know how hard Jordan has worked. It feels nice to have support everywhere I turn.

About Me

I am passionate about social media and advocacy. In the journalism world, I am the manager of social communications and social training at AARP. I recently joined the team in October 2012 after managing KOMU-TV8's online properties and teach social networking and community at the Missouri School of Journalism. I was a member of the inaugural class of the Reynolds Journalism Institute Fellowship in 2008-09. I speak on the power of social media in business, journalism, higher ed and non-profit world. I am also passionate about social media and advocacy.

I am a special needs advocate and share my stories and lessons as a parent of a child who was born with a physical difference on Born Just Right. I am married with two kids and a dog. I'm a fan of technology, running, photography and listening to live music with my husband.

If you're interested in hiring me to train your organization on using social tools, or show your organization how the web will change communication internally and externally, just let me know. I also speak to special needs organizations about advocating for your kids and letting parents know we can all work together to get our kids the support they deserve. The connections we make in person and online can go a long way in getting the support you're craving.